Cost of home care for 88 year old

troubleinparadise

Dear Cepheus,

So sorry to hear about your Mum - horrid for her, and very tough for you.

I'm tempted to say not to worry too much about the care home placement right now - it sounds as though you have identified where she will go when she is ready to be discharged. The assessment won't mean she has to go very quickly. And if the home is up to standard, they won't accept her unless she really is in a reasonable state (and certainly not at a weekend).

I'd also say that keeping the ward on track with her care is your bigger issue. They talk a great deal about discharge (always looking to see when the bed will become free) whilst seemingly not looking closely at the frail, unwell person in front of them. "Where next" is a bit of a red herring - getting her well is the first hurdle.

The pain medication is likely to be causing your mum delusions/hallucinations; the anaemia will also be affecting that. Infection leads to confusion (which can be very severe even if the infection is mild) especially in an older person. Plus being in hospital, erratic food/drinking, the illness itself. Whilst there is value in a person making decisions for themselves, reality is that your mum might be refusing medication, but she isn't truly making a reasoned decision - she is very unwell (and delusional as you say). I wish there was less emphasis placed on these refusals when a person is incredibly ill.

Let us know how today's visit goes. It is exhausting for you (I've been there myself for both my parents, so know only too well), but right now you are her voice and champion in getting as good care as possible. You may have to be a bit of a thorn in their sides, but your mum is your priority.

Best wishes & good luck

Savvy_Sue

I agree with t_i_p_, all sorts of things can make someone confused one day, and they might be quite with it the next: infection / drugs of all kinds / pain can all contribute to this. I had one very 'strange' visit to Dad, which naturally really worried and upset me, but the next day he was back on form.

So I do hope Mum is more lucid today.

cepheus

A Doctor gave her hours to live at 6pm yesterday. The problem may be due to an infection from the stent rather than the cancer. Seven of us sat overnight around her waiting, but she is still going. It was very distressing to see her try and instinctively try and get out of bed to the toilet at 8am despite being semi-conscious, it took some time for them to come round due to the change of shifts. I am shattered myself now and had to crash out just outside the ward to rest my neck from 3am.

Mum will now stay in the same NHS hospital rather than a home of course since it is not worth moving her. At last they have fitted put an automated Morphine syringe and been placed in a seperate room.

It seems that a hospice would have been a better choice when I suggested this to the consultant on Friday. My cousins daughter works in one and also thinks the automated morphine syringe should have been used earlier. Surprisingly there is no hydration drip fitted, they say it is too intrusive. She is on an end of life approach, does that mean they accelerate it by dehydrating her?

At least we have (at last) been placed in a separate room in the hospital.

God I wish the end would come. Her last word yesterday was 'enough'.

Savvy_Sue

I'm so sorry cepheus, and I'm glad you have mum in a single room now and hope that you can say all you wish to say now.

cepheus wrote: »

Surprisingly there is no hydration drip fitted, they say it is too intrusive. She is on an end of life approach, does that mean they accelerate it by dehydrating her?

I can't comment on that, but Dad formally went onto the end of life pathway when he pulled his drip out in the middle of the night, and no-one realised immediately so it was left for a few hours then, and then they suggested putting it back in about 12 hours later.

At which point some unfortunate junior doctor was faced with all of us asking WHY they were putting it back in when he was clearly dying!

We had wipes for his face and lips.

troubleinparadise

Dear Cepheus,

I am so sorry to read your latest post - this is heartbreaking for you.

From what I understand - and I do believe this to be true - the need for hydration in the form of an IV drip is not necessary in the later stages. The body is shutting down, and in fact that kind of hydration can cause more problems than it helps because the system becomes overloaded with fluid it cannot process. Not giving IV hydration is not to speed the process, it is unnecessary now, and it is not cruel, the body no longer needs it.

What can help are mouth cleaning sponges (sponges on a stick, like a lollypop) which can be wetted and used to moisten lips and mouth, without giving more water than might be swallowed easily. This can be enough to relieve extreme dryness and ensure comfort.

I know what you mean about the hospice, but moving your mum in these last few days would have been very unsettling for her. Whilst you understandably want the calmer environment, she is unlikely to be aware of it. Having loved ones who care about her, surrounding her with love is more important.

Her syringe driver will be delivering the medication she needs to keep her pain and anxiety free, and hopefully calm and peaceful.

This is a sad and difficult time, but also a special time - to be with your loved one as they travel this final journey is challenging, but will hopefully feel the right thing to do, and may later bring you peace.

Thinking of your mum, you and your family. xxx

cepheus

That's more or less what everyone has said. She still seems very restless at times though, and seemed to be choking on flem at one point before they moved her. Not sure how conscious she is but others claimed she responded to the priest today.

I came home tonight because my pacing and frustration may be making her, me and everyone else worse. I have 3 other relatives there, so I will go back at 7.30am to replace one if I don't get a ring first.

ukmaggie45

Just wanted to send you some good wishes at this very difficult time. Look after yourself - can be difficult to do with everything that's going on. Best wishes from Liverpool, Maggie.

cepheus

Thanks, Mum died at around 6.30pm today. I'm still rather shell shocked, but it was expected all the same. Her last 18 hours or so was relatively peaceful.

Torry_Quine

So sorry to hear your news. Take care of yourself.

Savvy_Sue

So sorry to hear this cepheus, and I hope you got some sleep.

If you saw a different post from me, I realised I'd cross posted and replaced it with this one!